Kids With Special Needs Face Bumpy Transition To Adult Health Care

Ruzanna Harutyunyan's picture

As medical advances help more children with serious illnesses survive into adulthood, more will make the passage from pediatric physicians and payment programs to adult providers and insurance. A new study suggests that this transition might not always be smooth.

“When they reach a certain age, children with serious medical conditions move to adult care,” said lead author Debra Lotstein, M.D., assistant professor of pediatrics at the David Geffen School of Medicine at UCLA. “Yet little is known about age-related transition in care. Clinicians often have a sense that kids are falling off a cliff when they switch care from the pediatric to adult systems.”

The authors surveyed 77 people between ages 21 and 24 with ongoing health issues who had “graduated” from a public program for low income children with special care needs in San Bernardino County, Calif.

The program serves children with conditions including cystic fibrosis, congenital heart disease and diabetes.

“This group of patients is somewhat protected medically until they turn 21 years of age,” Lotstein said, “but there is no similar coordination or payment for care on the adult side. They are doubly vulnerable because of having a severe medical condition along with being poor.”


Of those responding, 46 had experienced at least one adverse transition event affecting their ability to get care. Barriers to access included lacking a usual source of care (18 people), going without needed medical care (20 people) and foregoing or delaying needed care (28 people) in the last six months.

Only one in 10 were without insurance at the time of the survey, but 29 reported experiencing a period without insurance coverage since turning 21. Most of these gaps in coverage lasted longer than six months.

The study looked at one county in one state, so the results might be different elsewhere. Although the number of participants is small, Lotstein said the study design is strong because it is a population-based sample of all of the program graduates.

The study appears in the July issue of the Journal of Adolescent Health.

“Both the parent and the child should start preparing early for these age-related changes,” Lotstein said. “You need to know, when you might have to change doctors, at what age your insurance coverage will expire and start exploring your options. It’s never too early to begin building the child’s ability to be self-reliant in terms of caring for their medical condition and future school and work.”

“There is a growing population of youth with chronic health conditions who are becoming adults,” said S. Todd Callahan, M.D., assistant professor of pediatrics in the Division of Adolescent Medicine at Vanderbilt Children’s Hospital in Nashville. “This study is consistent with others that suggest that young adults are particularly likely to experience health care access barriers. This is especially true for young adults with chronic health issues and disabilities.” Callahan was not involved with the UCLA study.

“In general, I think that the public perceives that young adults are healthy and that people who need health care can get it, but research and clinical experience demonstrates that those perceptions are false,” Callahan said.